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| Abstract |
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Methods Fifty patients who received mechanical ventilation and died during hospitalization were randomly selected from all adult patients (N = 396) treated in 8 ICUs in a tertiary medical center during a 12-month period. Clinicians notes, use of physical restraints, and medication records were reviewed retrospectively. Data on communication method, use of sedation/analgesia (within 4 hours of communication event), and use of physical restraints were recorded on an investigator-developed communication event record for the first 10 communication episodes documented in each patients record (n = 275). Message content and method were recorded for every documented communication episode (n = 694), resulting in a total of 812 content and 771 method data codes.
Results Most charts (72%) had documentation of communication by patients at some time during mechanical ventilation. Most documented communication exchanges were between patients and nurses. Primary methods of communication were head nods, mouthing words, gesture, and writing. Physical restraints were used in half of the patients. However, most of the documented communication episodes (127/202, 62.9%) occurred when physical restraints were not in use. Communication content was primarily related to pain, symptoms, feelings, and physical needs. Patients also initiated communication about their homes, families, and conditions.
Conclusions A clinically significant proportion of nonsurviving patients treated with mechanical ventilation in the intensive care unit communicate to nurses, other clinicians, and family members primarily through gesture, head nods, and mouthing words.
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Notice to CE enrollees: A closed-book, multiple-choice examination following this article tests your understanding of the following objectives:
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| Background |
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Critically ill patients experience overwhelming communication problems caused by intubation and cognitive, sensory, or language deficits that distance the patients from caregivers and loved ones. Mechanical ventilation and use of paralytic and sedative agents impair communication between patients and others. Physical restraints used to prevent disruption of medical devices further limit patients ability to gesture or use alternative communication techniques.5,14,15
| Many patients die without being able to express their final messages to loved ones.
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In studying communication-related responses among nonspeaking patients treated with mechanical ventilation, Menzel15 found that patients had greatest difficulty in communicating with their family members. In fact, a patients inability to speak at the end of life can be a tremendous loss for the patients family members. Statements such as "If only I could have heard his voice one last time . . ." characterize family members regret about patients loss of speech and impaired communication at the end of life.14 However, some family members find reassurance and satisfaction in being able to "say goodbye" through nonvocal communication such as eye blinks, gestures, and touch.16,17
Studies of the experiences and stressful events among ICU patients indicate significant relationships between inability to talk and feelings of panic and insecurity (P < .001),4 sleep disturbances (P < .05),4 and stress level (P < .01).18 Fowler19 interviewed 10 surgical ICU patients after extubation to describe the communication experience and common messages during short-term intubation. Patients described not being able to speak during intubation as "scary," "frustrating," and "horrible." All of the participants in Fowlers study were physically restrained, most received sedatives and/or analgesics, and half reported that no formal mechanism was used to facilitate communication during intubation. Conversely, recent studies2023 describing distorted thought processes, delirium, and diminished problem-solving ability during critical illness raise important questions about the cognition and decisional capacity of critically ill patients and the accuracy or meaningfulness of their communications.
In a recent retrospective study24 of stressful experiences of patients who received mechanical ventilation in an ICU, a majority of subjects (78.1%) remembered having trouble speaking during ventilator treatment. Most of those subjects (82.7%) rated speaking difficulties as moderately to extremely bothersome. Episodes of terror were associated with not being able to talk because of endotracheal intubation (
=0.786).24
Similarly, in a prospective study15 of communication-related responses, self-esteem, severity of illness, difficulty with communication, and the number of days of intubation were significantly associated with feelings of anger, worry, and fear among patients treated with mechanical ventilation. Patients with higher severity of illness scores had the most anger about the inability to speak. These findings suggest that anger, fear, and worry are most significant for nonspeaking critically ill patients who are at greatest risk of dying in the ICU.
Most surveys of patients and qualitative accounts of the experience of mechanical ventilation are done retrospectively with patients who survive critical illness. To date, no studies have explored the content of communications or communication abilities of dying patients who receive mechanical ventilation in an ICU. Under-recognition and disturbingly high levels of pain continue to be common among critically ill patients, many of whom cannot communicate symptoms or request relief.7,25,26 Impairment in communication is a barrier to accurate assessment and optimum management of pain, delirium, and other signs and symptoms in the ICU. The extent to which nonsurviving, critically ill patients are able to communicate and how and with whom such communication occurs are unknown. The purpose of this study was to describe (1) the ability to communicate, (2) communication methods, and (3) content of communications in nonspeaking nonsurviving patients treated with mechanical ventilation in an ICU.
| Among intubated patients, those who are the most severely ill have the greatest anger about the inability to speak.
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| Methods |
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Design and Procedure
In this retrospective, descriptive study, review of clinical records was the primary method of data collection. The following demographic data were collected: age, sex, race, primary medical diagnosis, duration of mechanical ventilation, date of ICU admission, date/time of death, level of treatment at the time of death (ie, resuscitation attempt, withdrawal of treatment, withholding of treatment). Data sources included electronic and paper records of index hospitalization (ie, the hospitalization during which death occurred). Each entry about a patients communication (nonvocal or verbal) was defined as a communication episode. Detailed information was recorded on an investigator-developed, communication event record for the first 10 documented episodes of communication after intubation for each of the 50 patients (n = 275 communication episodes). The communication event record, a variation of the communication observation record used in prospective observational studies of patients communication in an ICU,28,29 structured the collection and coding of qualitative data in the following domains:
This level of detailed data collection was limited to the first 10 documented communication events for consistency and convenience because 10 or fewer communication episodes were documented in nearly half of the cases (17/36) in which documented communication episodes appeared. Content of communication and communication method were recorded, however, for all documented episodes of each patients communications (n = 694 communication episodes). In order to better understand patients communications at the end of life in the ICU, message content and method of communication during the last 48 hours of life were described in all cases in which documentation of communication appeared.
The automated nurse charting system used in the study site hospital included prompts and standard phrases such as, "Patient verbalized understanding and acceptance of condition." We and a group of experienced critical care clinicians (including nurses from the research site) evaluated these statements and decided that they were reflective of compliance with external standards rather than an accurate record of nurse-patient communication; therefore, these statements were excluded from data collection and analysis. Although called for in the original plan, collection of data on delirium, cognition, and sedation-agitation status was abandoned because the data were considered inaccurate for the following reasons: (1) nurses inconsistently applied verbal scoring on the Glasgow Coma Scale to nonspeaking patients, (2) not all shifts or units documented scores on the Glasgow Coma Scale or other standard measures of delirium, cognition, or sedation-agitation, and (3) retrospective chart review does not permit the questioning or stimulating of patients and the assessment required to accurately perform such measures.20,30
After data collection was complete, 5 charts (10%) were reviewed by a second reviewer using consensus agreement for resolution of discrepancies and refinement of code definitions. After refinement, the 50 records were reviewed again, and all descriptions of head nods in response to questions were considered communication episodes.
Data Analysis
Data from the communication event record were entered into a Microsoft Excel spreadsheet for tabulation and descriptive statistics (mean, SD, frequencies). The Excel file was exported to SPSS software (Version 11.5; SPSS Inc, Chicago, Ill) for cross-tabulation analysis to explore possible differences between communication method or communication content and (1) presence or absence of sedation and (2) presence or absence of physical restraint.
Qualitative data on communication content were transcribed to a Microsoft Word file and transferred to ATLAS.ti software31 for data coding and analysis. Content analysis procedures were applied to these data via line-by-line coding, constant comparison, and categorization. Initial codes were developed by reading and rereading the data, labeling phrases within each communication episode, and then combining similar content labels (eg, asking for or about family, wanting to go home) into themes (eg, home and family). Definitions were developed for content themes. Data were coded for content as well as for communication partner, case, and method, thus allowing analysis of the communication by any of these data characteristics. Content and method coding was conducted by the principal investigator (M.B.H.) with review and validation of content definitions by coinvestigators (P.T., K.D., and D.D.-V.).
| Results |
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23 = 2.6; P = .46) and communication content (
2 5 = 3.4; P = .67) when sedatives and/or narcotic analgesics were present did not differ significantly from method and content when the drugs were not present.
| Communication method or content did not differ with or without sedatives or narcotics.
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Documentation on use of physical restraints (presence or absence) was missing for 20% (n = 10) of the sample (see Table 1
) and 73 (26.5%) of 275 communication episodes. In most (62.5%) of the 40 cases with documentation on use of physical restraints, the restraints were used intermittently or continuously during the ICU stay. However, most 127 (62.9%) of the 202 documented communication episodes for which information on use of physical restraints was available occurred when the restraints were not in use. The method of communication used when physical restraints were applied did not differ significantly (
23 = 4.7; P = .19) from the method used when restraints were not applied. Communication content during use of physical restraints was more often about pain, treatment decision making, or questions about the endotracheal tube and less often about emotions than was communication that occurred when physical restraints were off (Table 3
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Patient indicates with family that he does not want long-term vent [ventilator] support, agrees to trial of extubation on [date] when whole family is there. Physicians noteThe patient squeezed hand for "yes" in response to questions, longest squeeze was to wanting more surgery to make patient better. Ethics consultants note
Additionally, several entries described a patients understanding of a treatment, test, or procedure:
Explained the need for permanent dialysis catheter, patient understood. Physicians note[Patient] wrote ETT bothered him, he gestured to pull it out, indicated he understood the need, but didnt like it. Nurses note
Although a relatively small percentage of documented communication episodes were between a patient and the patients family (n = 16), these exchanges had psychosocial significance and involved assistive communication technologies. For example, "[Patient] spoke to sister with Passy-Muir valve . . . stated [he] missed sisters yard and dog and wanted to go to church." Another patient spoke with her husband on the telephone by "speaking around" the tracheostomy. Communications with family members often included descriptions of nonverbal expressions of emotion such as crying (n = 2), hugs (n = 2), and smiles (n = 2).
Communication Within 48 Hours of Death
Documentation of communication content or ability within the final 48 hours of life was evident in only 12 records (24% of the sample). However, several patients (n = 5 ) were transferred out of the ICU before death to units in which computerized nursing documentation was not available. A total of 22 communication episodes were documented in the 48 hours before death. Nearly half (n = 10) were data on communication attempts, ability, or understanding without specified message content. Communication content in the final days of life included pain and other symptoms (eg, itching, shortness of breath) (n = 9), questions about the endotracheal tube (n = 2), and iconic gestures (okay, greeting) (n = 2). Half (11) of the 22 documented communication episodes in the last 48 hours of life occurred during the use of physical restraints. A similar proportion of communication episodes (54.5%; 12/22) occurred within 4 hours after administration of sedatives and/or narcotics.
| Discussion |
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| Communication occurs more often when restraints are not used.
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In our study, head nods and mouthing words were the most commonly used methods of communication, and the majority of documented communication involved yes/no responses to caregivers questions about orientation or pain, indicating that the communication partner, primarily nurses, controlled most of the communication and message choices in interactions with nonspeaking patients in the ICU. This finding is consistent with the findings of previous observational studies3,3234 of nurse-patient communication in the ICU in which communication was primarily nurse-initiated and controlled and consisted of short-duration (<1 minute), task-related information, commands, or questions that occur in conjunction with physical care. The use of electronic augmentative and alternative communication techniques may enable more frequent patient-initiated communication among nonspeaking ICU patients.28,29
The categories of documented messages in our study are similar to those identified in previous studies and clinical reports of impaired communication during intubation in the ICU.6,19,39 Our results, however, indicate that seriously ill patients do communicate about emotions, home, family concerns, and treatment decisions, although the extent and frequency of such communications appear to be less than those of communications about immediate physical needs and symptoms. The occurrence of longer, more in-depth social interactions have not been reported for seriously ill patients who were treated with mechanical ventilation; this phenomenon has mostly been attributed to either reduced consciousness40 or lack of appropriate interventions for nonspeaking hospitalized patients.41,42
Factors identified by acute and critical care nurses as limiting their communication with nonspeaking patients include heavy workload, patients severity of illness, difficulty in lip reading, patients inability to write, preoccupation with physical and/or technical aspects of care, personality of the patient, lack of appropriate training in communication skills, and lack of access to augmentative and alternative communication techniques or consultation.3,4345 Distorted thought processes and diminished problem-solving ability among acutely and critically ill adults compound the difficulty in interpreting nonverbal messages of these patients.22,23,40,46
Observational studies3,3234,47 of nurse-patient communications in the ICU indicated that nurses are likely to have more frequent and more positive communications with patients who have greater degrees of responsiveness than with patients who are less responsive. Sedating or narcotic medications were administered before more than 40% of the communication events in our study. We found no significant differences between communication method or content when sedation or narcotic analgesic medications were present and method or content when the drugs were not used. Thus, sedation and analgesia do not appear to seriously impair or preclude patients communication. Moreover, patients communication abilities were evident, although diminished, even in the last 2 days of life, despite the administration of sedatives and narcotic analgesics. Content did not differ proportionally from earlier communication.
The influence of family presence on communication interactions with nonspeaking critically ill patients is an understudied and complex sociopsychological phenomenon. Although most family members are unprepared for the sudden role of translator in a complex and emotionally charged pantomime during critical illness,5,35,45 they most often become the spokespersons and decision makers for voiceless, critically ill patients.5,9,11,48 In our study, the presence of patients family members and communication interactions between patients and their families were documented in only 16 (2.3%) of 694 communication episodes, and minimal use of assistive communication devices was recorded or described. Yet, previous surveys43,45 of critical care nurses indicated that the presence of patients families facilitated communication with patients treated with mechanical ventilation. In their analysis of videotaped patient-family-nurse interactions in the trauma-resuscitation room, Morse and Pooler49 found that when patients were unconscious, sedated, or intubated, families generally followed the nurses lead in communicating with the patient. When patients showed emotional suffering, their families responded by comforting the patients or countering the patients responses. Menzel15 suggested that ICU patients receiving mechanical ventilation may find communicating with their family members more difficult than communicating with nurses because patients may want to discuss or disclose different, more complex messages to family members. Although we did not assess message complexity and communication difficulty, documented communications between patients receiving mechanical ventilation and their family members contained descriptions of emotional behaviors, desires to be home, and use of tracheostomy speaking techniques. Further research on communication interactions between patients and their families in the ICU is warranted.
Our findings indicate that critical care clinicians, primarily nurses, do achieve some level of communication with ventilator-dependent, dying patients who are unable to speak. Nurses can be reassured that the administration of sedatives and/or narcotic analgesics for comfort and symptom control in the last days of life do not necessarily preclude communication between patients and others. Efforts to reduce or eliminate the use of physical restraints among seriously ill, dying patients may do more than any other intervention to permit and facilitate communication with these vulnerable patients. In previous studies,43,45 nurses indicated that patients ability to use assistive communication devices was a key factor in facilitating communication with patients receiving mechanical ventilation. Yet, evidence of the use of augmentative and alternative communication devices in ICU settings remains sparse. Only 2 patients in our study used tracheostomy speaking valves. Direct selection (alphabet or picture or word boards) and natural speech (electrolarynx) augmentative and alternative communication techniques other than writing were not mentioned in the clinical records. Clearly, improvement is needed in efforts to facilitate communication with patients receiving mechanical ventilation throughout the course of critical illness.
Limitations of the Study
The major limitation in using clinical records as primary data sources for research is missing, inconsistent, or erroneous documentation.50,51 Because we used retrospective chart review to collect data, the data are limited to those communications with and by patients that were documented by clinicians. Most likely, most communication interactions between patients and their families were not documented in the clinical record. Similarly, clinicians rarely record all communicative exchanges with patients. Therefore, our data most likely underrepresent the communication abilities and communication interactions of nonspeaking seriously ill adults. Whether use of automated charting systems such as the one used throughout the critical care units at this site dissuade or encourage elaboration about communications with and by patients is unknown. A consistent measure of cognition, delirium, or sedation-agitation would have strengthened our analysis but is another limitation of retrospective chart review. Finally, these data were obtained from a relatively small group of patients (n = 50) from a single institution. However, several different types of ICUs were represented.
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| ACKNOWLEDGEMENTS |
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| REFERENCES |
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M. O'Shea Forbes Prolonged Ventilator Dependence: Perspective of the Chronic Obstructive Pulmonary Disease Patient Clin Nurs Res, August 1, 2007; 16(3): 231 - 250. [Abstract] [PDF] |
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